Adrian
Posted by

New to cll

Adrian
Posted by
08 Mar 2016

New to cll

Hello I am 45 yrs old and have just been diagnosed with cll

i have just spent all of Xmas not knowing what was wrong with me but being told it is not an infection something more serious but can't say what until more tests are done all that I knew was the glands in my neck are swollen 

another two weeks pass I am called into hospital and told what is wrong with me I have cll ,this might sound stupid but it was a relief to finally find out what I have . And have had this condition for four years but no symptoms until now.

i have read all the books my consultant has given me . But for some reason I still feel like I haven't gained any answers of what I can and can't do or should and shouldn't do 

I am on watch and wait and will go for tests every four months is this good or the normal practice and how long on average does watch and wait last before treatment 

so at the moment I feel alone with no answers 

Comments

09.03.2016

Hi Adrian,

I was diagnose with CLL two years ago, it was purely by accident that I found out as I had a blood test for something else. I go for check ups every 6 months as my blood counts are stable and I'm watching and waiting too.

Like you, I felt a bit in the dark after talking with the consultant. I was given the contact details of the Haematology nurse at the local hospital. Arranging to go and talk with her was one of the best things I did. She was able to talk things over with me in a less clinical way, answer all the questions that I had. I'm sure you're local hospital with have someone similar so I'd try and arrange to see them as well.

For me, the main thing I had to deal with was the effect mentally being told I had cancer had had on me. Again, the nurse was happy to listen to my worries and put me in touch with a local cancer charity.

It might seem like you're alone at the moment, but there are people out there who are more than willing to help. As I say, start with your local Haematology nurse but I'm sure Bloodwise would be able to put you in touch with someone as well.

Best regards, Anthony

 

 

 

 

 

 

 

 

 

 

 

 

11.03.2016

Thank you very much Anthony you have helped a lot I go to get my  bloods taken again in early April and this will be my first time since being diagnosed and my wbc was 22 but I haven't a clue to weather this is high or low ?

And as you say the hardest thing to come to terms with it is in my head is that I have cancer and as yet there is no cure

And when people hear you have leukemia and don't believe you cos your not in an hospital bed 

But thanks very much for your advice kind regards Adrian 

 

Norman L.
15.03.2016

Adrian, you're right - it's strange knowing you have a blood cancer when you (hopefully) feel well. I was diagnosed a year ago (aged 57) after going to see the doc about a small lump in my neck. Within 4 weeks I was a CLL patient, being told I'd probably had it for some time. 

One year of watch & wait later, still feeling great, but with some enlarged lymph nodes, my doubling rate means I'm about to start FCR (the Gold Standard chemo treatment). 

The best advice I can offer is this... Everyones CLL journey is unique and what has happened to other people will not necessarily happen to you. Don't browse the Internet too much, because most of the info you'll find is out of date and treatments continue to improve all the time, with better outcomes. Much of what is reported by patients comes from other countries that don't have the benefits of the NHS - sometimes their treatments and experiences are a result of their financial or insurance status, or their geography.  Hopefuly, none of that should be relevant to you.

Good luck!

15.03.2016

Hi Adian, I was diagnosed 9 years ago now ands am still on watch and wait.  A wbc of 22 isn't high, mine started at that and is now around 30.  The lack of information has been a problem, especially trying to find out when they will start treatment.  The thing I was told was that you are more likely to die with CLL than of CLL, which is reasuring.  I do get problems at times, such as night sweats, but not all the time.  I seem to be wide open to infections and I get very tired at times.  So I take precautions as regards to infections and I make the most of the days when I'm not tired. 

15.03.2016

Thank you Norman I am finally starting to get my questions answerd

i hope everything goes well with you 

15.03.2016

Thank you Eric 

it is weird while you are feeling okay but as each day passes I am more positive 

18.03.2016

Hi Adrian,

Really sorry to hear that you're feeling alone and without answers. Diagnosis and the time after diagnosis is very difficult as you've got so much to try to come to terms with but for Watch and Wait patients it's often even more difficult as you have the added confusion of being told that you have blood cancer but that they aren't going to do anything straightaway which goes against all logical sense.

Watch and Wait is something of a misnomer as whiilst you're not receiving any active treatment you are being carefully monitored by your treatment team who will have an action plan in place for should the condition develop and you require treatment. The trouble is that action plan is often communicated and may never be needed depending upon what happens with your CLL and this uncertainty can be very unsettling.

It sounds like you could really benefit from sitting down with someone and talking in greater detail about your diagnosis and treatment plan to give yourself a greater feeling of control.

The first person to consider contacting is your clinical nurse specialist which you should've been assigned when you met your consultant. They are there to talk to you about any concerns you may have and are best placed as they know all the particulars of where you're at.

Peer-to-peer support can also be really helpful as you touched on in your reply and we do know other Watch and Wait CLL patients that we could try and put you in touch with including a lady called Kate Giles. Here's a link to her profile and blog: https://bloodwise.org.uk/people/kate-g-1

Another avenue worth considering is the CLL Support Association they are a fantastic organisation that specialise in supporting CLL patients and again are extremely knowledgeable about Watch and Wait.

Last and by no means least our Patient Services team are here to help in any way that they can on 0808 2080 888 or via email at support@bloodwise.org.uk

The most important thing to appreciate is that you're not alone and that help and support is out there should you ever feel that you need it.

Regards,

Andy

24.05.2016

Thanks Andy you have helped a lot and now mentally stronger and have had a lot of questions answered 

08.02.2017

Hi its been a year now since I was diagnosed with CLL and my consultant has told me they may look to start FCR treatment at the end of the year 

Just wondering if anybody can tell me what to expect and how good this treatment is